Bioethics, healthcare policy, and related issues.
The New York Times today has an interesting profile of Dr. Desiree Pardi, a palliative-care specialist in New York who was diagnosed with breast cancer in her early 30s, and refused palliative care – while still working in palliative care professionally – during her prolonged and painful death.
Dr. Pardi had gone into the field because she thought her experience as a patient would make her a better doctor. Now she came face to face with all the ambiguities of death, and of her profession.
She remembered patients who complained to her that she did not know them well enough to recognize that they were stronger than she had thought. Now she discovered that she felt the same way about her own doctors. “I think they underestimated me,” she said in an interview last summer.
She came to question the advice she had been giving. She thought about quitting. “I just decided I have to believe in what I’m saying,” she said.
It’s tempting to see her treatment choices – demanding extensive low-probability and experimental treatments – as being in some way hypocrtical for someone who had made a point of encouraging others not to continue with therapeutic treatments near death. At times she was quoted expressing anger at doctors who recommended palliative care or hospice, and at times she is described by others as being “in denial” about her own condition – much in keeping with her own attitudes toward palliative care and patients’ beliefs, as seen from her professional perspective. The article at times seem to imply that there is in fact a contradiction there.
But I think, and I think most people in the field would agree, that there is no tension between active therapy and palliative care – that both are available options that different people will choose for different reasons, or even that a given patient will choose under differing circumstances. The idea that some patients would reject palliative care is hardly new; the fact that one such patient would turn out to be a palliative care specialist is merely a coincidence, ironic at most, and hardly that. (Nobody claims that palliative care is right for everybody.)
From that perspective, I was a bit annoyed with this article, because it seems to imply that there really is something wrong in the way Dr. Pardi practiced as a physician, or worse, that there is something wrong with palliative care – that it “underestimates” patients, that it is something that palliative care workers try to impose on others but reject for themselves, or even that it is the sort of “death panel” that the insane right wing keeps conjuring up. Also annoying is the tone attributed to Dr. Pardi herself (she was dead when the article was written): that palliative care was in fact something to be avoided; that she herself questioned whether it was right for her to offer it to her own patients. It’s not clear how authentic this is, but I hope Dr. Pardi was not as much “in denial” about her own profession – let alone her health status – as the article seems to imply; if not, the problem then is not that there is something wrong with palliative care, but that a doctor in that field had not thought deeply enough about what is right with it before it became an issue for her personally.
The meaning of the piece for me was that people’s personal choices are unique and not always predictable, and that this is the reason patients must be allowed to choose the terms of their own treatment. (Dr. Pardi – an MD/PhD with extensive experience – chose to allow her husband to be the point of contact with her own caregivers, and never knew the extent of her own disease, though she was adamant in her choices about how aggressively to treat it.) There is a reminder here of the degree to which aggressive treatment might serve some patients’ needs (Dr. Pardi’s final course took barely a year and a half from her last remission to her death, but it is likely that she extended that period somewhat by refusing palliative-only care and insisting on a high-calorie diet) – though that hardly renders palliative care unnecessary, or argues for returning to the days when painful aggressive treatment was the only option available.
2 Responses to “Physician, Do Not Heal Thyself”
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April 8th, 2010 at 5:40 PM
I am Desiree’s husband and while I can appreciate the numerous comments and that my wife’s “Story” has generated so much discussion, I need to convey that the article was very misleading and that many of the take away messages were wrongly presented.
My wife, knowing her life was going to most likely be shorter than most spent her remaining years promoting the value of Palliative Care; something she herself FULLY accepted in her life.
The problem is most people lump Palliative Care and End-of-life-care as one field of medicine. They are two seperate disciplines. Second, Palliative Care is about providing symptom support throughout all stages of a chronic disease, it is about providing patients with a full understanding of their condition and treatments so they can live a life they want and it is about enssuring a plan is put in place to support a paitent’s wishes.
My wife never coerced people into ending a fight. She herself believed everyone should make that decision – but they have to know what they are getting into. They need to know the likely effects of treatments, such as CPR and that it is a process where your ribs most likely crack, your lungs are punctured and you most likely wind up on a respirator (not like we have grown accustomed to on TV). She believed in people needing to know the truth to plan accordingly.
She also believed no one should ever take away or overwhelm coping mechanisms (her’s being to use me as a buffer) and so we had a wonderful medical team and a wonderful integrative oncologist for over 5 years who supported that wish through me. But my wie was well aware that she most likely would die in agony; that financially I would be burdened with excessive credit card debt and emotional exhaustion and we agreed to go that route. I stopped working and learned how to function as a home health-aide to suppport her.
I was well aware our choices were setting her up for increased pain and she was willing to endure it, but she told me that if the time came where I needed to make a choice to withdraw care that I should remember that there is a difference between extending life and extending death and that her body was too sick to be “saved” and she would not want to be saved if she could not function at a high level. We had that discussion, another aspect of Palliative Care – my wife lived and breathed Palliative Care every day.
Please understand Palliative Care is about providing people the information they need (and avoiding false hope) so each and every one of us can make an informed decision about how we want to deal with a chronic disease, it is about quality in life and quality in death and tailoring a medical plan to achieve those goals.
She did not forgo Palliative care and did not want Palliative Care to visit with her in Boston because it overwhelmed her coping mechanisms, because she wanted me to be the buffer – not because she did not believe in it. Note that you are reading a few quotes from countless hours of being interviewed; the true meaning of them is lost in this “story”. Please remember the article in the NY TIMES is in fact a “story”.
One thing my wife wanted was for people to learn, to discuss, and to explore the concept of Palliative Care based on her illness and I am thankful so many of you are discussing.
Robert
April 8th, 2010 at 6:44 PM
Thanks very much for commenting, and for sharing these personal issues.
I was certain, after reading the article, that you and your wife approached her treatment thoughtfully and authentically; I hope I did not imply otherwise. And I’m sure there was much more to her as a person, and to her course through her illness, than any short article could tell. Thank you again for broadening the picture.
Your comments on the purpose and benefits of palliative care are well-taken. Thanks for the reminder, and again for what you have brought to this discussion – both here and in the newspaper – with your generosity and openness regarding such a difficult personal matter.